Empower&Inspire: Understanding and Accelerating Research for Leigh Syndrome Virtual Conference September 19, 2023 Please join us for a virtual conference focused on Leigh Syndrome. Researchers, industry, patients, and patient families…
2023 Hybrid Global Learning Conference August 2-5, 2023 The Ehlers-Danlos Society is delighted to announce 2023 Global Learning Conference will be a hybrid event, taking place in Dublin, Ireland from…
NORD's Living Rare, Living Stronger Patient & Family Forum May 6, 2023 featuring the Rare Impact Awards (May 4) Hosted at the Renaissance Downtown Hotel, we will bring the rare disease…
Research Roundtable: Understanding Speech and Language Challenges in Glut1 Deficiency April 25, 2023 Featuring Professor Dr. Jörg Klepper and Kristina Simonyan, MD, PhD, Dr. Med To register, click here.
The 2023 IWMF Educational Forum Learn, Grow, Empower April 21-23, 2023 St. Louis, MO The 28th Annual IWMF Educational Forum will be a unique experience to learn from medical experts and…
CureGRIN's GRI Conference 2023 March 23-26, 2023 Join us in Boston for this year's conference. GRI Conference 2023 is a special annual opportunity for clinicians, industry reps, GRI families, and…
Monthly Gatherings: Parent and Caregiver Group March 18, 2023 Led by: Glenna Steele and Rob Rapaport Topics: Social time and support - come with questions, topics to discuss, or stories to…
VEDA's Annual Virtual Conference: Life Rebalanced March 6-10, 2023 The Vestibular Disorders Association will be hosting its third annual Virtual Vestibular Conference. Vestibular disorders cause a variety of disorienting and…
Rare Disease Week on Capitol Hill February 28-March 2, 2023 NOTE: Rare Disease Week on Capitol Hill 2023 is an in-person event with some events accessible via livestream. Meetings with…
FSHD University: Dr. Rita Perlingeiro on Stem Cell Research and FSHD February 23, 2023 Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute…
Feeling Fit with FSHD: Postural Changes, Part 2 February 23, 2023 Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We…
Early-Onset Parent Roundtable February 21, 2023 Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and…
Monthly Gatherings: Parent and Caregiver Group February 18, 2023 Led by: Glenna Steele and Rob Rapaport Topics: Social time and support - come with questions, topics to discuss, or stories to…
FSHD University: The FORTITUDE Trial February 14, 2023 Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound…
Wellness Hour - Towards Hope February 13, 2023 This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the…
Feeling Fit With FSHD: Postural Changes February 9, 2023 Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today’s session. Postural changes…
WM People of Color Support Group February 3, 2023 at 1:00 PM ET The WM People of Color Discussion Group will be having their next meeting for patients and caregivers…
Meet the Experts: Lung February 1, 2023 We are delighted to announce Professor Lisa Henske will be our next expert discussing her work on BHD and lung cysts. Lisa is…
Classical HCU Patient Virtual Meet-Up February 5, 2023 Meetups are an opportunity to connect patients and caregivers impacted by Classical Homocystinuria to one another virtually. About this event Struggling with…
Classical HCU Parent-Caregiver Online Meetup March 4, 2023 at 10 AM Online meet-ups are an opportunity to connect parents & caregivers impacted by classical homocystinuria to with each other. Whether…
WA State Rare Chronic Illness Support Group A supportive group for WA state residents living with rare health challenges facilitated by Carrie Pope, MSW, LICSW 2nd Friday of each month,…
Web-Based Rare Chronic Illness Support Group A peer support group for those living with rare health challenges led by Kerry Heckman, MSW, LICSW 1st Tuesday of each month, 4-5pm PST…
The Cambridge Rare Disease Network presents RARE Fest 2022 Engage.Educate.Empower. November 25-26, 2022 WE’RE BACK IN PERSON FOR RAREFEST22!! For the experts and the curious of all ages. For everyone.…
MDS Patient & Family/Caregiver Forum November 19, 2022 Presenters: Jeffrey J. Pu, MD, PhD, The University of Arizona Cancer Center Laura M. F. McPheeters, FNP-C, The University of Arizona Cancer…
Online Webinar: Labour And a Chronic Illness With Johan Beun, Speaker November 17, 2022 Johan served till 2009 as Ambassador for NICTIZ and was international advisor to various countries, ministries…
© Copyright Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
